Weight loss

[Animalmadwoman]

Is it considered a backward step to have feeding tube back in after 14 months? My husband was a good 11 stone after coming home in July 2019. He maintained a fair weight until a couple of months ago. The diarrhoea & nausea a problem, so it was decided by consultant to try Creon. This had side effects which were lack of appetite & nausea & sore throat! So he has stopped that.

It’s so frustrating as when feeling ok eats well, but then pays the price , cramping, & diarrhoea .

I think as he only weighs 9.7stone the feeding tube beckons!! Thoughts... advice, ‘cos I’m so worried!

[Mauser1905]

Has he been given metoclopromide or low dose erythromycin for delayed gastric emptying. This may cause nausea and vomiting. Creon is not known to cause these two symptoms at least from what and seen heard.

Backward or not, I consider thats a tactical use. As the immediate priority is for him to stabilise his weight loss and with time gain some weigh to offer safety margin.

The three symptoms you stated lack of appetite, nausea to me seem from delayed gastric emptying and the sore throat perhaps due to this stagnant contents pushing upwards giving him sore throat and also vomiting.

[Animalmadwoman in reply to Mauser1905]

He was on Metroclopramide ( not the Erythramycin though) for quite a while but they had the side effects he was taking them to stop! He was then put onto Prochlopremazine , a small anti sickness tab you dissolve between gum & upper lip. It seems to help.

I often wonder how thin is too thin? He weighs 9stone 7lbs dressed. I think he will probably have feeding tube back as a last resort! Thank you for your reply.

[Mauser1905 in reply to Animalmadwoman]

Thats good to know he has been given the medicines. Also some patients get endoscopic 'stretch' of the pylori sphincter to aid. Some times botox injections as well. Or electric stimulation.

In worst case scenario a surgical 'cut ' may be a possibility to help empty the stomach.

Can you confirm if the feeding tube to be placed is a jejunostomy tube? This means the issue is seen to be at the pylori sphincter and the feeding tube will bypass the stomach and go directly to the small intestine.

How thin is thin. Its unique to each individual and their underlying conditions. Issue is if more setbacks come his way, would his body have sufficient margin to cope with that? Hence the feeding tube. For the circumstances you stated thats the most reliable way to ensure his weight loss is arrested and perhaps regular feeding will improvise his condition to an extent to try out other options to relieve him of the root cause.

One can not keep trying out options while continupusly losing weight, feeding tube is insurance against 'unknown unknowns'.

[Animalmadwoman in reply to Mauser1905]

Hi yes, it would be a jejunostomy tube. He doesn’t have a stomach as such as most of it was used to form his new oesophagus, so food passes through a little too fast. He does observes the rules re dumping, but I agree, he might need the safety net of adding a bit more weight via the tube.

I still feel early days in the whole recovery journey as many people have had a bumpy ride for a few years after surgery.

It’s good to get the reassurance of feedback from other survivors . Thanks 👍

[Mauser1905 in reply to Animalmadwoman]

Your husband has a complex history, very long ICU user due to multiple complications. This does not bode well with textbook recovery.

Mental attitude does play a major role in the new normal acceptance and recovery, and on top the age factor exacerbates the recovery/healing time.

In principle his recovery and for that matter everybody else's recovery is unique to their own individual conditions. So does the weight thing.

[ccfc in reply to Animalmadwoman]

Hi, Regarding weight, how tall is your husband ? I am 5 feet 8 and before my operation eight years ago I was 13 stone 7 but am now constantly 10 stones but don’t consider myself to be too thin.

Best Wishes, James.

[Animalmadwoman in reply to ccfc]

Hi James , he’s approx 5’6”( shrunk over the years!) Before surgery he was overweight at 14 stone . He lost nearly all muscle mass after post op complications ie 5 weeks in a coma & 6 months in ICU. He came home at 11 stone , but over 14 months has gradually lost some. It see saws between 9 stone 8 & 9 stone 10, but this just seems too light at 9.7 & his body looks skeletal😰

We were told by the consultant that this may be his ‘ new ‘ weight , but even he thinks it’s a bit too light, hence talk of feeding tube.

He also suffers with depression & PTSD after ICU , so am worried about the mental effect ‘backward step’ thanks for your reply

Rose

[Molly14]

Hi - I’m 5yrs on from my oesophagectomy surgery - I’ve been left with constant nausea and zero appetite along with the dumping etc - I live to complete routine - eating by the clock regardless - I only weigh just 7 stone as I can’t put on one ounce of weight since surgery and maintaining it is hard work - however I look well and I’m on the go all day, very active which is why I struggle to put on weight - I worried about my weight for about 2yrs but GP and consultants are all happy with me - I never weighed more than 8 stone so they factor that in - the only thing that helps my nausea ( I have tried everything ) is getting out for a walk every morning - sets me up for the day - all the best

[Animalmadwoman in reply to Molly14]

Hi Molly thank you for your reply. It’s good to hear that you are doing well after 5 years. It’s a hard road for you all & I’m certain a positive outlook helps immensely.

It sounds as if you have that!

It’s also very tough on loved ones & family . I feel at a total loss to be of any help! Just being there is all I can do! I’m just grateful my husband is still here after original prognosis!

Best wishes

Rose

[Molly14 in reply to Animalmadwoman]

My husband felt the same looking after me, I was only 48 when diagnosed completely out of the blue - it’s not an easy job for the carer and a long journey - it took me 2yrs to adapt to living with the side effects - I also went through PTSD - everyone that goes through the surgery loses quite a bit of weight - I can’t look at myself in the mirror anymore - it’s all bones but I don’t worry about it now - you hang in there and make sure you get a bit of time for yourself - very important to - very best wishes to your husband x

[052517]

I was on the feeding tube for 1 and half years post op. Soooo happy when it was removed. But with no reserve weight I started to lose weight. After losing 1/5 of my body weight the feeding system is back in. I feel way more energetic. Have returned to strength and cardio workouts. Still probelm solveing the feeding issues but can do that with clear thoughts. Better quality of life with the system in

[Animalmadwoman]

Thank you for your reply. I think that is the problem ! He used up his reserve weight gradually , sometimes puts on a couple of pounds here & there then loses it. Now he can’t afford to lose more. He realises , horrid though it was, the jej provided 1,000 calories overnight.

I managed this for him early days, so perhaps now he could manage alone. He says he’ll miss his bath! 🙁

[052517 in reply to Animalmadwoman]

The feeding system is not a perfect solution. Risk (no bath) versus benefit... I seriously didn't realize how lousy I felt until I got calories and nutrition. I am able to walk, ride my bike, play pickleball and have started lifting weights. Also, allows time for the brain to heal from the surgery and icu experience. Try to think that the feeding tube is a step forward (toward healing) instead of a depressing backward slide. This was a bigger surgery with more potential complications than any of us knew. Hang in there